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Saw my new GI Wednesday, question

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Crohn's Disease
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Posted 9/10/2016 5:58 AM (GMT 0)
Finally got in to my new GI doctor on Wednesday since moving a month ago. He was nice. Said that he never uses Methotrexate with his patients, and asked why my old GI put me on it. Well Imuran gave me pancreatitis and biologics alone haven't done the job yet. So I have a feeling he'll be pulling me off the Methotrexate.

Have a scope for October 5th scheduled. Depending on what it looks like in there he wants to probably increase my infusions to every 6 weeks, and maybe up the dose. Will that be enough without something like Methotrexate? I don't know!

For now he gave me more Entocort. Which I don't know, doesn't seem to work as well as prednisone for me. I'm worried about getting to October 5th. Thursday morning I woke with yet ANOTHER swollen bottom lip. I told him about it the day before, how it's been happening more frequently. He agreed it's probably some form of oral Crohn's. It's usually been happening during the last week that I'm due for my Remicade. This time it was 2 days after my Remicade (drove 4 hours to get my infusion back in my old city). So maybe it needed to kick in again? Makes me nervous that it's going swell and stay that way. Entocort really doesn't help with all the outside of the colon effects of Crohn's right?
Posted 9/10/2016 9:19 PM (GMT 0)
Glad to hear that you got in to see your new GI, and that you seem to like him. Certainly hope he gets you on the right track. I would ask him his opinion on combination therapy, particularly in relation to antibodies.

Entocourt releases in the TI, and is usually only effective there, as far as I know. I don't think it's comparable to Pred, but won't have the side effects, sort of a Pred Jr.

Going to 6 weeks is fairly common. Hope that works out for you.
Posted 9/10/2016 9:24 PM (GMT 0)
Were you taking methotrexate subq (seems likely given the dose your were on). If you were taking methotrexate orally, this probably wasn't helping much with regard to controlling inflammation. Oral methotrexate in IBD is used mainly to prevent antibody formation to biologics. Only IV, intramuscular or subcutaneous methotrexate has been shown to have steroid sparing effects in Crohn's.

Increasing the frequency of Remicade infusions may help and is usually the next step if you are losing response. Alternatively, the dose can be increased which may be easier for you since you wouldn't have to go to an infusion center more often.

There are some extra-intestinal manifestations of Crohn's disease that do correlate with bowel inflammation and apthous ulcerations are one of them. It's unclear if your lip swelling is related but it could get better if Entocort helps to control your inflammation.
Posted 9/11/2016 4:02 AM (GMT 0)
Jen77, I read a lot in this forum. Back in the day when I was on Remicade, my infusions were every 4 weeks. We found that worked the best in controlling my symptoms. My gi told me if we had to do them every 2 weeks we could, fortunately we didn't have to go to that schedule. Try to take it a day at a time with the new dr. & not stress yourself out over something that is not in your control.

Take care.
Posted 9/11/2016 11:28 AM (GMT 0)
A couple of years ago, my GI doubled my Remicade to 10 mg/kg and moved the frequency to every six weeks. That has really helped a lot.
Posted 9/12/2016 4:46 PM (GMT 0)
I had the remicade trough level test and it showed I need remicade every 6 weeks. Can you ask your doctor about it? I only started this regimen last infusion which was 10 days ago and don't know how things will go on.
Agree with others that you need to be on either Methotrexate or Imuan as a combo therapy to prevent your body from forming antibodies. Since you had a reaction in the past from imuran, i think you should stay on Methotrexate. Why don't you negotiate it with your GI and understand his rationale for wathdrawing it.
Entocort has been a life-saver for me for 5 years. But my disease is localized in the TI and it has never been of any help for my rectum, for example. So, if your disease is in the colon, it won't be that effective.
Good luck with your colonoscopy :/
Posted 9/13/2016 12:31 AM (GMT 0)
Thanks everyone. I'm worried about dropping the Methotrexate too. Especially since I do okay on it, as far as side effects go. My blood work always looks good. If it helps me to not build antibodies to the Remicade, why drop it? He seems so against it. But I will talk to him again about it. He says it's too toxic for the liver and that you have a certain amount of time that you really can be on it. So I don't know.

I am concerned about this random lip swelling thing though. Not sure if I can get an ointment for it? Or maybe the mouth wash for oral Crohn's would help? So worried it's just going to swell one day and not go down. But yes, I need to figure out a way to stop worrying about things that have no occurred yet. I can't imagine the stress I put on myself and my disease with all my worrying!
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